Nipple Sparing Mastectomy with immediate reconstruction
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Thanks Soyaandpepper,
At the onset, the BS said that they do MX with immediate implants as the norm (at Mass General in Boston) because they have so much experience with it. And, it was known also at the onset that I would have to have radiation. The RO said that she is experienced with radiating with an implant. We talked about it at great lengths. They also changed my chemo regimen so 1/2 of it would happen before surgery and 1/2 of it would happen after surgery to give me time between surgery and radiation (originally it was all supposed to be before surgery). When I talked to the PS he said that Plan A would be BMX with immediate implants and Plan B would be BMX with tissue expanders (if he had any trouble with the implants). We never talked about radiation causing any issues. Now I feel like he's singing a different tune. I'm ok with everything as long as we are talking about a low risk of failure and that tissue expanders would pose a similar failure rate, if not....I would have just asked for tissue expanders but feel I was led down the path I took from the beginning by my doctors.0 -
I had an NSM with Immediate reconstruction with a permanent implant (Natrelle silicone) and FlexHD (same as Alloderm). I had three fields of Radiation-nodes, breast, clavicle. 30 treatments plus 5 boosts directly to the center of my breast. My Radiation ended in March and so far so good. My new foob looks great and feels supple. No Capsular Contracture as yet although it is always a risk.
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When I first consulted with my ps , we discussed what she would do if I needed radiation because I was having the TE's put in on the day of my dmx. She said if it turned out that I needed radiation, she would try to get my te filled as much as she could before I had to start radiation because radiating the skin first then expanding the radiated skin is much more challenging. As it turns out I didn't need radiation though.
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I haven't been on here for quite awhile - but my best friend just got diagnoised with bc and they think she might be a canidate for nipple sparing - they will know more after MRI. Hope everyone is doing well.
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valerie so sorry to hear about your friend. Hope she is a candidate for nipple sparing.
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So sorry to hear about your friend, Valerie, but she will be lucky to not only have NS but to have a friend like you by her side who understands what she's going through.
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Kate - you are always so nice - love your new picture! How is everything going with you?
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May I ask the ladies who've had successful NSMx, is it worth it? Reading through the thread, it sounds like we are bound to lose sensation from the nipple and that they don't look the same due to loss of supporting tissue. My BS as advising I can't save my nipple due to DCIS, but my feeling is that if I insist on it it can be done (my DCIS was found about 2 inches away from the nipple). I just don't know if it's worth the fight.
Thanks and best wishes to all.
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CarrieR-I had NSBMX-1 step to implants, yes its true that you loose a lot of sensation, I'm 3 months post op. and still haven't got back 1/2 the feeling yet. My doctor said I will not get back 100% but a lot of it but it'll take a long time (like years maybe) I think the decision to do a NSMX is based on the look of it and not the feel. When my doctor told me that I could do the NSBMX, I was thrilled because I didn't think I could live without the nipples (which are a big part of the breasts themselves), now that I've done it maybe it was good in the sense that I got to look as normal as I was without having to do reconstruction of nipples and stuff (which is a plus for me who didn't want too many surgery hence the 1-step to implants rather than TEs and then exchange).However, the only drawback for me now is that I have headlines permanently. Not liking that too much, especially when I wear sports bras to gym. Now after my surgery which takes me to a 36C (was a small 34B before), I thought I could finally wear clothes without a bra to fill up my clothes, but there's the headlines! So it depends on why you want the NSMX if you're a candidate for it!
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Varrie,
I had nipple sparing and if I could go back, I would have had them removed.
The problem I had with keeping my nipples is that the whole reconstruction revolved around them. What shape, size and placement of implants...everything seemed targeted at that. I was always told nipple this or nipple that when trying to explain what I wanted for my reconstruction, how I wanted to be the size I was before, not bigger, etc. The PS instead was always chasing something about the nipples even though I kept repeating that I do not care about the nipples. And in the end, I have one pointing out to the side and the other pointing down anyway. So all that limitation for nipples was for naught: the nipples are not placed well and I do not looked like I said I wanted to look either. I wish instead that the mounds had been rebuilt like I wanted them to be for me, and then the nipples reconstructed in the proper place on that.
In short, keeping your nipples does not guarantee a better reconstruction result and may even prevent getting the best possible one.
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Valerie- Still struggling with the LE a little bit. There is definitely a steep learning curve to treatment (or I'm a slow learner- lol!) but it will come in time I'm sure. Hope you're doing well! (((hugs)))
Carrie- While it's true you probably will lose sensation, if you remove your nipples and have them reconstructed, there will definitely be no sensation. The problem with reconstructing nipples is they never really look as real as natural ones. In fact, I've seen photos of some on the picture forum that are absolutely horrible- and permanent. (I would really advise you to research and see photos for yourself.) I know, for me, keeping my nipples made me feel less disfigured. Since I had NS, and my incision is below the fold of the breast, it's barely visible that I even had MX.
If I'm reading your information right are you having just a UMX (one side)? If so, it's going to be extremely hard for any PS to match the reconstructed nipple to the natural one if that is important to you. I am concerned about your BS advising you not to save it due to DCIS. DCIS is the best candidate for NS as long as it's far enough from the nipple. If your BS is not behind the procedure 100% I would find out how experienced they are in the procedure. Most who are very experienced believe in it completely. If you are having to fight for it (as you put it) I might consider a consult with another BS and get a second opinion. Only you can decide what is best for you but I believe the majority of us on here are very grateful that we were able to have this procedure. Some have had issues but I think they're glad they at least tried to save the nipples. And all the research shows that women who can have NS actually adjust better physically, emotionally and psychologically to the MX. Good luck with whatever you decide.
Soyaandpepper- You are the first one I've seen who has the permanent headlights. I have this issue, too, and it's definitely made dressing challenging sometimes. I did have one PS tell me during a consult that they could adjust this should I ever need a revision or implant swap so it can be fixed if it really bothers you.
MondaysChild- Did your PS end up making you bigger than you were before? I post on another thread about implants and this seems to be the biggest issue with this kind of recon. PS's are not listening to what we want and keep pushing for bigger (and in their minds- better). Some have said we need to push for better communication where the PS puts in writing what our desires are when it comes to size. I would agree that if a women wants (emphasis on wants) to be larger or smaller than NS may not be in their best interest for all the reasons you described. It sounds like your recon is not what you asked for in any regard. Have you thought about a revison with a new PS? Insurance has to cover all revisions as they do recon and many of your issues could be repaired. (I also had a nipple skewed to the side that was repaired during exchange.) As far as nipples pointing outwards this usually happens when a PS tries to put the implants closer together than your anatomy allows to create cleavage. This can also be repaired.
I think we all deserve to have the results we want and our PS's should listen to us the same as a cosmetic customer. Unfortunately, it doesn't always happen so anyone who has not yet had their recon I would advise you to be very clear on what your expectations are. I wish I had been so many times during this whole experience. Show them photos of what you want, get everything in writing, find out what the risks of complications are, and then make the best decision for you.
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CarrieR - Despite having post-MX healing issues I have never regretting choosing NSM. I had bilateral surgery and wanted to look about the same as before BC, but asked to be a bit fuller. I was very fortunate to have a BS with lots of experience in NSM and a PS who was a good listener and at my very first consult began asking me what my expectations were. As Kate wrote, I also credit NSM for how well I've done through this whole surgical journey. My PS fills the TEs with quite a bit after MX and I woke up with a slightly smaller version of me, but I was amazed that it did look like me and it really wasn't that traumatic. If I had lost my nipples, I think it would have been significantly more difficult to accept. But, that's just me...
I lost part of one nipple to necrosis, but the other survived beautifully. I do not have permanent "headlights". They respond to touch and temperature as they did before surgery. I have had return of some sensation, but it is certainly nothing like before surgery - actually a bit uncomfortable at this point.
I have read different guidelines for the "comfort zone" of how close to the nipple the lesion can be. Is this why your BS is recommending against it?
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Kate33, I have to say as someone who has had a nipple removed due to dcis too close underneath to safely keep it, I object to you classifying it as disfigurement. This process is hard enough without you using words like that. My reconstructed nipple is very realistic in shape and feel. I am no more emotionally scarred than anyone else having to go through this horrible journey and trust that my surgeons had my best interest at heart when they advised the need to remove the cancerous nipple. Not having been through it yourself, who are you to judge me and my experience?
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Kate,
Yes, I was made bigger than I was before. During the initial consult, I said I wanted to be the same size. I originally had one-step, straight to implants and came out huge. I developed necrosis on both sides so those had to be removed and expanders placed. It turned out that those expanders were ones that would have again make me just as big, because of their diameter.
Those sat untouched with only their initial fills during chemo. I developed a blue thinning area under one side and the other expander misplaced so badly it needed replacing before filling after chemo. During chemo when we were planning replacement of those expanders, I talked about how the original implants were too big and that I did not understand why I got those after saying I wanted to be the same size. His response: "Most women want to be bigger." Seriously! What I said did not matter at all. One size fits all for reconstruction goals it seemed. I wanted to make certain I was heard on size, so at another appointment I talked to him about what he said about everyone wanting bigger. He claimed I was repeating that out of context. He did in fact say exactly that and nothing else, but now claimed he said "Most women want to be bigger. They feel like if they have to go through this, they may as well get something out of it." Hello!! First, he did not say the extra, but so what if he had. It is still the exact same attitude that bigger is better. I was a 32C before. It is not like I was almost flat and asking for flat again. I think some of it is he just did not remember what I said I wanted. He always talked a lot but apparently was not actually listening when I talked, like his mind was somewhere else and on something else he needed to do. He certainly did not remember what I said about my hope and needs. Maybe it was only that he did not listen to me, but I felt really insulted, and especially hurt, that he would not build me back to that size, clearly thinking I had been unattractive and unacceptable.
Anyway, as I said, I went back in for yet another set of expanders. That was the first half of August last year. I got my first fill the end of August. Do you remember seeing the wedding of Prince William and Kate last August? That was right in between my second expander placement and first fill. I remember looking at her elegant small breasts and being wistful for the same. This time the expanders placed were a size smaller because I, yet again, said I do not want to be larger and wanted to be the same size as before. The thin skin under one side was removed and this is what probably caused that nipple to point down.
Also at the time there was pocket repair to the other side where the first expander had badly misplaced. It looks like the inferior medial part of that pocket may have been over dissected because it ended up being much too low during expansion. During exchange, extra skin had to be removed on that side and the decision was made to remove it from the lateral area. This has caused the nipple to be far off center of the breast mound and point outwards.
So in my case, both of the nipple misplacements are due to surgical excision of skin and not placement of implants, which are about the same distance as before. I do not think this can be fixed anymore. Before exchange when I had only the problem of the one pointing down, I asked if that could be lifted and was told no, that it would probably die because of lack of tissue behind it. Then the other one went way off during exchange.
As to the size of the artifical breasts, the final implants are about the correct base diameter now. I think the remaining size issue is the profile selected. I have stripper-like bulging in the upper pole which makes them look like missiles coming off my chest with a very, very fake slope. I have Mentor high profile and suspect I would have looked better with Mentor moderate plus or Allergan style 15. They are about the correct space apart, just not dissected evenly in the medial area so I have dissappointing lack of symmetry there. You can see this on the picture exchange. Another thing I had asked to be addressed at exchange, actually the one thing: a contracture on one side there creating the lack of symmetry. I was told during fills he would fix it, but I found out literally minutes before surgery that he changed the Plan section and declared that side perfect and would not be fixing that as we discussed. When I started to talk about that in the pre-surgical holding area, he cut me off saying I did not understand and nipple this and nipple that. Mindblowingly, he later agreed this had to be fixed and gave me some useless massage instructions to try to break up scar tissue that had set many months before, saying he wanted to try a conservative approach first before doing a revision. Now I have to have another surgery to fix what could have been addressed while I was open already during exchange. THAT would have been the conservative approach. So if he had not had to chase some elusive something about nipples, I might have some symmetry that I so wanted to have back.
So here I am with two nipples in wrong places and I feel more disfigured by that than I think I would feel about reconstructed nipples. I think I could have been more accepting of reconstructed nipples, accepting that they do not look like my originals because they are not my originals. But at least they would have been well placed. You can actually see the different positions in t-shirts or silk shirts since there is also permanent nipple projection. Not a vulgar amount of projection and about like before which is just enough to disclose their placement. I do not think I would have liked only 3-D tattooed nipples and would have wanted some type of flap recon with a 3-D areola tattoo. But the implants hurt like crazy and are likely to be removed soon anyway. Perhaps if I get over being beat up by the process and get the courage to try again, I will have the nipples removed and start over.
(Edited for annoying typos)
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SuzyBlue- I think you misinterpreted what I said. I did not say all women who have to have their nipples removed are disfigured. I said for me, personally, I feel less disfigured by being able to keep mine. Carrie was asking for different women's opinions on whether or not those of us who have had NSM thought it was important to keep the nipples. I was merely speaking about my own personal experience, as were the others, so was not judging your experience. I was speaking about my own and passing on research I have done. You obviously have adjusted quite well to your experience and it sounds like you had fantastic surgeons. Some women have not been so lucky both in keeping their nipples and in saving them.
MondaysChild- I'm so sorry for all that you've been through. It makes me so angry to hear of someone being treated that way. BC is hard enough without our doctors making it even more challenging by not listening, disregarding our wishes and then discounting our dissatisfaction. You deserve better and I would encourage you to have a consult with another surgeon. You don't have to move forward with any more surgeries but you'd at least know if you have options for the future.
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Thanks so much for your replies, Kate33, Monday's Child, TinaT and Soyaandpepper. I guess like every other stop on this terrible journey, there's no certainty of outcome. Monday'sChild, I am so sorry for what you have been through - I like my surgeon a lot, but I too get the impression they think we all want to be bigger.
I don't know if he is just not experienced at NS (I know he doesn't do microsurgery) or if he truly feels it would be dangerous for me to keep them. I had a 5x3cm lump of tissue removed at lumpectomy, and apparently it had 4.5cm of DCIS in it, extending to 4 out of 6 margins. That was in the upper outer quadrant. It seems to me that it was far enough away from the nipple, but he was saying that because DCIS is in the ducts it is safest to remove all the ductal tissue.
I'm in the UK as a patient on the NHS. So it's a bit tougher to pick and choose from a long list of surgeons. Also, I am now almost a month out of my lumpectomy, and am scheduled for the mx in two weeks' time - so my radiotherapy is very delayed and I don't want to incur further delays by seeking another surgeon. However, based on what I've picked up here (thanks for the link to research on NSMx further up the thread), I'm going to ask again. I think for me, being able to keep the nipple would make a huge difference, psychologically, for me.
Thanks again.
Carrie x
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I am very happy with my new foob. I've always been large (DDD/F) and now, on one side at least, I am the smaller size (large C/small D) I've wanted to be since I got boobs at 13. Now for the next one in a month from now! My PS also said most women want to be larger but once he saw my size, he agreed that what G-d gave me was a bit too much (I obviously waited in the boob line too long!) and my new foob fits my frame much better.
PS: I don't have permanent headlights, although sometimes my foob will get one before the other side does...I just can't feel it. So it "acts" like a normal boob but my brain doesn't know it.0 -
Hi Ladies,
Have not been on for a while so tyring to catch up on a few pages. Hi Kate and Valerie and Tina. How are you beautiful ladies doing?
There are a lot of topics being discussed here and I hate to interject a new one but I have a quick question. It may be more for the veterans of NSM or maybe not. I am over two years out from a NS BMX to implants. I lost the tip of one nipple on the left side, but other than that they have fared well. I have noticed most recently that they have a tingly almost painful feeling. Like a "zap" feeling when you touch them. I assume this is some feeling coming back. However it is not a pleasant feeling and I was wondering if you any of you have experienced any of this?
I would like to comment on some of what you girls are discussing by giving input on my own experience. NS was very important to me. I really wanted to save my nipples. I did lose part of one as I said above, but overall am happy that I kept them. I do feel that the reconstruction did revolve around the nipples though and they are way too high on my breasts. I have a lot of ripples and they cannot remove skin because it would alter the location of the nipples. One Dr wanted to do a lift to place the nipples lower but my original PS did not think that was a safe idea because they nipples have already been compromised and I may lose blood supply there. I have seen some nipple reconstructions that look amazing. They do have not ripples and everything is in the right place. All of this is really so hard. I feel you just have to do what your gut tells you to do and what feels right for you. This is no guarantee you will get a perfect result, but your PS should working with you to get you as close as possible. I really feel bad when I hear someone like Monday talk about how their PS was flat out not listening to her wishes. It's hard enough we are going through this and we have to push,push,push and be our own advocate. I know my Dr was a great Dr but I often felt he rushed me and didn't really listen either. I'm still not completely happy with my reconstruction results but took some time off and decided to get back to living life. It's always in the back of my mind though. People don't realize how much this kind of stuff really affects us women.
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Hi sweetie! It's great to "see" you again. I'm sorry you're still unhappy with your reconstruction. I had the same issues with rippling. Mine was really bad. (I'm on the picture forum if you want to see.) I know we've probably talked about this before but the fat grafting completely eliminated all of the rippling. Though I would never (ever, ever) recommend my PS I would highly recommend fat grafting. It creates an extra layer so you can't see the ripples running down the side of the implant. I would definitely try to find someone really experienced in it, though. I have some names or there is a thread on here for PS recommendations. It's called "Microfat grafting or BRAVA doctor recommendations". There might be someone in your area when or if you want to try to do something. It's hard, though, when part of you wants to get on with life and the other is still unhappy. I'm that way with the implants. Would really love to get rid of them all together but the thought of another surgery makes me shudder right now.
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Hi Kate Darling,
By the way you look great in that pic. Getting younger every year I see!
Thanks for the advice. We did talk about this before and I did do an email consult with Dr. Khouri. He wanted to replace my implants to smaller ones and put in FG. He said my pocket was too big. You didn't seem to happy with him from what I've read in your posts. I know you are happy with the FG though. I did see two women Dr's who do FG but said that would not solve my issues. I have a lot of other issues that are contributing to my unsatisfactory results. As far as that goes I'm holding off on doing anything until at least next year.
Did you have an issues with the nipple zapping sensation as I described above? How do they feel now that you have more fat tissue around them?
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Sweetie- Thank you! You're so sweet. Sorry- no zaps here, but I have heard other people talking about it. I am completely numb. I did used to get zaps on the side and it was so annoying. It finally went away and I do have a lot of sensation there so maybe it's a good sign for the nipples, too? Khouri had said that if I went with total fat grafting I would get sensation back but not sure how that would possibly work as fat doesn't regenerate nerves so?????? The fat grafting did make everything feel more natural, though. The skin feels thicker and it's warm over the implants where before it was always colder there than the rest of me.
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sweetie2040 - Hi, good to hear from you! My BS said it sometimes takes 2-3 years for nipple sensation to return, but her patients report that it's more of an awareness of touch or clothing rubbing than the feeling it was before surgery. I'm 1-1/2 years out and I have noticed the zaps you describe in the nipple that survived intact, but oddly I "feel" it about an inch away. Nothing yet on the side with the necrosis.
Sorry you're still struggling with things. It is hard to move on when we still deal with meds and thoughts of possible surgeries, etc. I'm right there with you!
All the best!
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I love the fact that I had NS. I still look like me but larger. I was super flat and even going larger my nipples are in the right place. My radiated nipple is pretty lazy, the non radiated side reacts to touch. For those of you having the headlight issue and would like to go without a bra you can purchase silicone nipple shields. I bought mine at a mastectomy supply store but since have seen them in Target and Walmart. They just sick to your skin no tape or glue and not expense at all. I use them alot when wearing sundresses with no bra or strappy shirts with no bra. I am having my exchange next Tuesday the 21st and am getting excited to get to the end of this part of the journey.
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Hi sweetie - good to "hear" from you. I'm al little over two years since original surgery - and I don't feel anything painful as "zingers", but when the nipples are touched it is not a pleasant feeling - it's more like a feeling of pressure, I feel like my nipples are a touch off center - but overall very happy - oh and I do see some rippling when leaning over, but not much.
Kate - interesting that fat grafting has made the implants not feel "cold". - My husband jokes that I have a "ice-chest" as they are always cooler than the rest of my body - doesn't bother me though
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Valerie- With the temps over 110* here I'm kind of missing my cold chest! lol!
It's like old home week on here! We just need TNLady and hurleygirly!
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Kate-I know you've done well with the fat grafting. I just feel like it be so much for me to go through that route as I would have to see Dr. Khouri for that. No one here would do it the way he does and the Dr's here don't thing just FG alone would help. Glad that your happy with it though. I know how much you struggled and followed you all the way through your journey. Does have fat give you feeling though?
Hey Tina! So i'm not alone. That's good to know. I wasn't sure if something was wrong or not. I kind of figured it was nerves regenerating. Since I am over 2 years out this would make sense. It is definitely not a pleasant feeling. Not real pain, but an annoying feeling.
Valerie-you and I were also on the same time frame so that just confirms it is probably what I said above. Glad your happy with everything two years out and I've seen your pics before and you do look great.
Kate-Yes! I remember the time when I was on here like 20 times a day! I really needed you girls and you were all so amazing to me. The help and support here was amazing. It was honestly all I needed in terms of a support group. I thank God for you girls and BC.org I talk about it all the time to women I meet just going through this.
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sweetie- Khouri is training doctors every day so I think it will just be a matter of time before it's more readily available. I have heard wonderful things about Dr. Christina Ahn in New York City (nycbreastreconstruction.com). From what I hear she does just as good a job, if not better, than Dr. K. and uses identical methods. I know you don't want to think about it now but file it away. You never know!
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Kate-that's so good to know. Maybe I am just going to be waiting it out. I will look her up since NY is very close to me and that is much more doable than Fl. I don't want to make a move until I know it will solve my issues. By the way I look pretty good in clothes but in something lower cut my peck muscles do the odd contortions. I am assuming your's don't do that anymore since your FG?
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Sweetie- Unfortunately, mine still do that. It really bugs me, too. I did hear of a PS in L.A. who will take out your implants, put new ones over the pecs and then do fat grafting over that (or he'll do total fat grafting but that takes 3-4 surgeries and you have to have enough fat). He does something to restore the pecs and afterwards there's no more of those weird contortions. I've considered having a consult with him since he's so close. A member on here had that surgery and she is really happy.
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Kate-Wow can't believe you still have that. I wonder if girls who have augments with silicone under pecs get that too. I don't think I'd want to have a whole other surgery and replace implants again to correct that although maybe it could be done when it's "time" to replace your implants. I thought though that for BC reconstruction is was best to put implants behind the muscle or are saying it would be ok over because of the FG?
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